The Good Husband

Jackie at age 38, at home in San Francisco
Lew Lorton
Jackie at age 38, at home in San Francisco

Some years ago, my healthy, vibrant wife, Jackie, began to suffer physical symptoms variously diagnosed as lupus, polymyalgia rheumatica, smoldering multiple myeloma or, more vaguely, “immune problems.”

What all these conditions shared was an inability to be treated effectively. When Jackie’s quirkiness grew, I believed it was her response to having a difficult chronic illness. She left her job as a meeting planner at a large organization, saying she couldn’t keep up with the hundreds of decisions she needed to make at work.

At home, creating a grocery list could consume two solid days, yet the list would remain unfinished. Jackie shunned most socializing. She gave up reading books in favor of skimming magazines that had lots of pictures. We frequented a few favorite restaurants where she could order without reading a menu. I took on more and more household tasks: planning, shopping, cooking. Yet, to the casual observer, Jackie was the same intelligent, charming person she had always been.

She absolutely refused to discuss any changes in her abilities with me.

In 2011, Jackie developed pneumonia, becoming severely ill in the space of an hour. To keep her alive, she was sedated for three weeks so that oxygen could be pumped directly into her lungs. At the time, I didn’t know that sedation is like pouring gasoline on dementia. Or even that she had dementia.

From the moment she awoke, it was clear her mental symptoms were worse. She began losing words and had trouble expressing ideas or forming sentences.

Finally, after two or three years of worsening symptoms, she agreed to see a neurologist. After a battery of tests, the doctor told us, without much preamble or affect, that my wife almost certainly had a form of dementia known as primary progressive aphasia (PPA). Jackie’s reaction to this diagnosis was complete denial — no discussion nor any visit to a health-care provider from that day to the day she died.

In the end, it may not have made much difference. There is very little known about PPA and its variant, frontotemporal degeneration, which I believe afflicted Jackie. We had drugs to tamp down the occasional unmanageable behavior. Other than that, we were on our own. I was solely responsible for monitoring my wife’s well-being.

Amazingly, as Jackie descended deeper into dementia, she became sweeter. She smiled a lot. She wanted nothing more than my company or that of the caregiver who came to work for us.

Faced with my wife’s diagnosis of dementia, I first asked myself, “How long?” Then I asked myself, “What’s next?” Most patients with dementia eventually become unable to walk, stand or control bodily functions. Eventually, they forget how to eat and drink. Every person with dementia is different. Every path is different. Every timeline is different.

In many cases, relatives and friends disappear. Even if a caregiver has paid support, the responsibility is endless, and inescapable. I was terrified of a limitless future, each day turning out worse than the one before. Yet I did my best to appear happy whenever I was with Jackie, soothing her with words and touch.

All caregivers get to that same dark point where we know our loved one is gone, swallowed up by the disease, even as some physical being lingers on. I missed Jackie. At the same time, I still had her. And I was so afraid of a future without her.

My wife died in May, as gracefully as she had lived. In her last few weeks, I became aware of something important about myself. I had always wondered — perhaps all men do — if I could do the difficult things in life. Would I turn out to be the good and decent man I wanted to be, that I had promised to be, in our marriage?

Now I realized that, during the last, difficult four years of her illness, I had unthinkingly given up almost everything that took me away from her. Most of these losses I hadn’t noticed. Those I noticed I hadn’t minded. I had become the good husband I had always hoped to be.

Just as her illness stripped away Jackie’s tough surface to reveal her sweeter core, caring for her allowed me to see something good about myself. It is the best and most important thing I’ve ever done.

Lew Lorton’s blog, which details his experience of caring for his wife and his life after her death, is at justaguymuddlingthrough.com.

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